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Policies to foster quality improvement registries: lessons from the Swedish case

Levay, Charlotta LU (2016) In Journal of Internal Medicine 279(2). p.160-172
Abstract
Background and objectives

Multi-institutional quality improvement registries (QI registries) are a promising approach to quality improvement. They are also used for clinical research, public quality reporting and other valuable purposes. The aim of this study was to identify elements and outcomes of national policies to promote registries in Sweden and to compare them with recent policies in the USA.



Methods

This case study draws on previous studies of Swedish registries and on interviews, observations and document studies conducted in Sweden and the USA.



Results

In Sweden, registries are fostered by favourable patient data regulation and an indirect control approach... (More)
Background and objectives

Multi-institutional quality improvement registries (QI registries) are a promising approach to quality improvement. They are also used for clinical research, public quality reporting and other valuable purposes. The aim of this study was to identify elements and outcomes of national policies to promote registries in Sweden and to compare them with recent policies in the USA.



Methods

This case study draws on previous studies of Swedish registries and on interviews, observations and document studies conducted in Sweden and the USA.



Results

In Sweden, registries are fostered by favourable patient data regulation and an indirect control approach combining government funding with soft regulation and professional self-governance. This enables the development of high-quality QI registries which are used for improvements by engaged clinicians, for clinical research and for decision support for practitioners and stakeholders. For example, Riks-HIA/Swedeheart achieved improved outcomes in cardiac intensive care, SCAAR/Swedeheart was used in a unique registry-based randomized trial, and the Swedish Rheumatology Quality Register provides a Web interface for patient encounters and clarifies adverse effects of biologic drugs. Still, the system has persistent limitations, especially the administrative burden on participants. In the USA, Medicare's programme for qualified clinical data registries and other recent changes mirror Swedish policies. Automated data capture is a US advantage, but uncertain funding and complex data regulations stall registry development in the USA.



Conclusion

The findings of this study indicate that tailor-made data regulation and a soft regulatory policy approach foster high-quality QI registries with multiple meaningful uses. These findings offer a framework for further cross-country comparative study to evaluate registry policies. (Less)
Please use this url to cite or link to this publication:
author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
health policy, legal/regulatory issues, quality improvement, registries
in
Journal of Internal Medicine
volume
279
issue
2
pages
160 - 172
publisher
Wiley-Blackwell Publishing Ltd
external identifiers
  • pmid:26435356
  • scopus:84955145173
  • wos:000371617500005
ISSN
1365-2796
language
English
LU publication?
yes
id
113bb6b0-049e-4dac-a2d5-843c53fef36e (old id 8084163)
alternative location
http://onlinelibrary.wiley.com/doi/10.1111/joim.12438/full
date added to LUP
2015-10-23 16:23:59
date last changed
2017-09-17 05:38:32
@article{113bb6b0-049e-4dac-a2d5-843c53fef36e,
  abstract     = {Background and objectives<br/><br>
Multi-institutional quality improvement registries (QI registries) are a promising approach to quality improvement. They are also used for clinical research, public quality reporting and other valuable purposes. The aim of this study was to identify elements and outcomes of national policies to promote registries in Sweden and to compare them with recent policies in the USA.<br/><br>
<br/><br>
Methods<br/><br>
This case study draws on previous studies of Swedish registries and on interviews, observations and document studies conducted in Sweden and the USA.<br/><br>
<br/><br>
Results<br/><br>
In Sweden, registries are fostered by favourable patient data regulation and an indirect control approach combining government funding with soft regulation and professional self-governance. This enables the development of high-quality QI registries which are used for improvements by engaged clinicians, for clinical research and for decision support for practitioners and stakeholders. For example, Riks-HIA/Swedeheart achieved improved outcomes in cardiac intensive care, SCAAR/Swedeheart was used in a unique registry-based randomized trial, and the Swedish Rheumatology Quality Register provides a Web interface for patient encounters and clarifies adverse effects of biologic drugs. Still, the system has persistent limitations, especially the administrative burden on participants. In the USA, Medicare's programme for qualified clinical data registries and other recent changes mirror Swedish policies. Automated data capture is a US advantage, but uncertain funding and complex data regulations stall registry development in the USA.<br/><br>
<br/><br>
Conclusion<br/><br>
The findings of this study indicate that tailor-made data regulation and a soft regulatory policy approach foster high-quality QI registries with multiple meaningful uses. These findings offer a framework for further cross-country comparative study to evaluate registry policies.},
  author       = {Levay, Charlotta},
  issn         = {1365-2796},
  keyword      = {health policy,legal/regulatory issues,quality improvement,registries},
  language     = {eng},
  number       = {2},
  pages        = {160--172},
  publisher    = {Wiley-Blackwell Publishing Ltd},
  series       = {Journal of Internal Medicine},
  title        = {Policies to foster quality improvement registries: lessons from the Swedish case},
  volume       = {279},
  year         = {2016},
}